On a medical merry go round, any support?

GlasweJen

As to the title really. Just seen another specialist who has given up and discharged me to the care of another department.

I have multiple diagnoses of rare disorders but they all contradict each other in terms of treatments and I have some strange symptoms that don't fit into any of the diagnoses but affect me really badly.

This has been going on for over 15 years (and I'm not even 30), I've been in every hospital in Glasgow plus a few in Edinburgh. I've seen neurologists, cardiologists, electrophysiologists, neuro-ophthalmologists, gynaecologists, immunologists, gastroenterologists, endocrinologists, urologists, physiotherapists, occupational therapists and now I'm off to see a rheumatologist.

I take 30 tablets a day, I'm on oxygen, need a bi-pap machine to breathe at night, had a heart transplant, am stuck in a wheelchair most of the time and sometimes it gets me down.

When I speak to my GP they just click buttons on their computer and offer to send me to a psychiatrist but the last one I saw said I'm just isolated and there was nothing he can offer.

I have a great family and a supportive partner, a group of friends that are great for listening to my moans, but I feel so different so much of the time. I want to meet people like me or talk to someone who at least understands my situation and not yet another specialist who talks to me for 15 minutes, orders a test and sends me away to see in 6 months. Nurse practitioners are nice but only ever want to talk about "their" special part of what's going on and not my overall problems which is frustrating.

Is there any support for people in this situation?

sheeps68

From personal experience support seems to be everyone has their own little corners and nobody does the big picture. However I've found my community physio gets it and goes above and beyond her role as long as I don't tell anyone she does it.
Do you know any other patients with same condition? It could be worth looking at any contacts that way as there is no one that understands like someone with similar issues. Even the rarest of conditions usually have a website and and contact details that may be worth you contacting.

GlasweJen

The problem is that I don't have a name for the overall condition, just a few names for what causes some parts of the problem. I once went to a myasthenia gravis support meeting and I had very little in common with anyone there even from a medical perspective so that didn't help much at all.

Paul_1977

You need to get in contact with someone higher up, write to local GP's and so forth.

sheeps68

I'm afraid it will always be a problem if you do not fit the expected boxes. I have asthma but am brittle with several other add on aspects. Brittle asthma is a rare and dangerous type that is totally misunderstood. As such I do not fit any of the boxes for help or support.

In my area age concern have taken over most of the community support but as yet I do not reach there criteria.

If you have community matrons in your area they may be of help. They would have helped me a few years back but have now been withdrawn.

merlin68

You poor thing i know that feeling well, i think they see me because there intrigued by someone who has both di george and ehlos danlos, then discharge me as there is nothing they can try.
Im fed up of being in a wheelchair and in pain.

FBaby

Do you need more support from the perspective of coping with how your illnesses make you feel, or trying to understand and deal with your symptoms better? If the first, could a counsellor or psychologist help rather than a psychiatrist (who deals with MH illnesses as a doctor not a therapist). Ideally, you would want to see a health specialist (it is an official sub speciality of psychology) who should be able to help you cope with the restrictions that comes with your health.

If what you need most is better understanding of your symptoms, could you try to pinpoint which condition is most associated with the symptoms that cause you the most trouble and see how about joining a group for this particular condition?

GlasweJen

I'd say the first one but my GP says that I already take anti-depressants (for the neuralgia - I don't have depression) so doesn't see what referring me to mental health services can do for me.

Savvy_Sue

GlasweJen wrote: »

I'd say the first one but my GP says that I already take anti-depressants (for the neuralgia - I don't have depression) so doesn't see what referring me to mental health services can do for me.

I'm a little upset on your behalf by that response. Do MH services ONLY deal with depression? Does the fact that you're taking ADs without actually being depressed mean that there's no help available? Are talking therapies entirely without value, both for those with and without depression?

I'd say words fail me, but clearly they don't ...

GlasweJen

My GP seems to think so.

My neurologist seems to think that i should see my GP more but whenever I go I feel like a nuisance so I only go when they send for me now.

mel48rose

Is there not a sympathetic GP in the practice? You should never be made to feel like a nuisance. GP's ought to treat everyone with repect and understanding.